My mom was diagnosed with Parkinson's disease in April, and also has major depressive disorder. She says that showering causes her to feel "unbearably bad" and gets very agitated (wringing her hands and pacing in the bathroom) when she is forced to shower. Does anyone know if this could be related to Parkinson's? It seems like more than the lack of hygiene that sometimes accompanies major depression.

She is seeing a neurologist for the Parkinson's and depression, and the neurologist is focusing on treating the depression, since the Parkinson's symptoms are not as bad as the depression. She has small hand tremors and an unusual gait, and has also said she no longer tastes food. She spends most of her time in bed (she has a lot of anxiety and doesn't like interacting with people, and feels that most things are pointless. Her depression has been very resistant to medication, and although her energy level has gotten better with a high dose of Effexor, her mood is still very negative. Her neurologist is planning to add Abilify this week to see if that helps as well.), although she will accompany family members out to eat or to the movies if encouraged.

She currently lives with her sister, who is very passive and is not comfortable forcing my mom to do things. When I visit weekly, I make my mom take a shower, and it's usually about an hour to an hour and a half long process in which I set a timer to let her know when she's going to have to do it, then when the timer goes off, I will give her "a few more minutes," then finally get her up (if I ask her to take my hands so that I can help her out of bed, she will, but she won't get up on her own). Today I had to stand inside the bathroom door to block her from leaving, and then repeatedly tell her that I know she hates showering and that it feels bad to her, but that she has to do it because it's not healthy to be dirty all the time. Once in the shower she will wash her body and hair (I offer to help her, and she sometimes wants help and sometimes doesn't), and then finish up and get out, but describes feeling that showering is pointless because she never feels clean, and also that it physically feels bad. I tried to get her to be specific about how it feels (pain/pins and needles/bugs crawling/discomfort), but she said it's not painful, it just doesn't feel right.

Sorry for the long post, but has anyone ever heard of this before? I initially though that she just didn't want to shower, and that it was related to the depression, but I don't really think that's it because of her extreme agitation when already in the bathroom, and her insistence that it feels strange. She's generally upfront and honest about how she feels, so I don't think she would make up that it physically feels strange.

Depression with Parkinson's is pretty common. From the Mayo Clinic: "Parkinson's disease presents special problems because it can cause chemical changes in your brain that make you feel anxious or depressed." So it seems treating the depression really could be treating the Parkinson's, particularly if her motor symptoms aren't severe.

That having been said the motor symptoms themselves could be part of the issue. Does she feel unstable in the shower? Maybe a shower bench would help. Or perhaps she could take a bath. If it's the feeling of the water itself that's an issue, what about taking a spongebath so she doesn't have to have water all around? Could she choose which method to use to get clean?

If she "never feels clean", what's missing? If she doesn't taste much, maybe her sense of smell is altered, so maybe she doesn't smell her bath products the way she used to. In this case, perhaps she'd like to be involved in getting a new bath product that she's happier about. Or if her motor symptoms are sufficiently bad, maybe she spills things on herself enough that it seems like a losing proposition? In this case, a bib or removable, washable outer shirt for mealtimes might be helpful.

Does someone accompany her to doctor's appointments? If that person isn't you, perhaps you could go along once to ask about some of these issues. I expect her physicians can direct you and her other caregivers to Parkinson's-specific resources; having community will help you all manage.posted by nat at 4:12 PM on December 9, 2013

This might sound like avoiding the problem but... is there a bathtub available? Would she be willing to take a bath instead of a shower? That may be different enough that it may help with the problem.posted by brainmouse at 4:13 PM on December 9, 2013 [1 favorite]

I know it's not a direct answer to your question, I have no direct experience with Parkinsons, but was wondering if you have thought about sponge baths for your mother to change the way the water would feel on her skin.

Can you add a shower chair or hand rail to the shower to make her feel more secure? I suggest these things because when my elderly mother had a bad fall she didn't want to shower for ages and would just wash herself in the sink, it took as a while to weedle out of her she felt nervous in the shower so was avoiding it.posted by wwax at 4:14 PM on December 9, 2013

She doesn't really have balance issues, and I've offered baths but she also doesn't want to do that. I would be fine with helping her with sponge baths, but I would worry about her hair being dirty. I could always offer to wash it in the sink, which she might be willing to let me do.

Before the depression/Parkinson's she had a very lengthy and thorough bathing routine, and I've wondered if part of her resistance is that she's not able to handle that level of cleaning herself anymore, but again, that doesn't really seem to address her insistence that the water feels strange. She also isn't able to shave her armpits and legs, although she has let me do it occasionally in the past, she says that it's not enough or doesn't help (I think that's part of her depression making things feel pointless).posted by odayoday at 4:18 PM on December 9, 2013

Sorry to threadsit, but also, I do go with her to her appointments and have talked to the doctors about her issues, but I don't think I really realized before now that she's not just resistant to taking showers, but that there might be some actual tactile thing happening.

Also, she doesn't really spill things (her Parkinson's symptoms are currently quite minor), so I don't think that's an issue for her.posted by odayoday at 4:21 PM on December 9, 2013

Possibly relevant - if she'd accept a sponge bath, but you're just worried about her hair, I just wouldn't worry about her hair if I were you.

Going the no-poo route seems tailor made for your mom's situation. A lot of people have difficulty with the adjustment period (it can get greasy for the first couple of weeks), but if she's not going out much anyway, that probably wouldn't be an issue. Sponge her hair down with warm water when you give her her sponge bath, and use a boar bristle brush on it. If her hair is really long, it can still work, but I'd seriously consider switching to a very short cut if she's willing - it would be easier for her to take care of herself, and being able to do it herself might give her an emotional lift.posted by kythuen at 4:25 PM on December 9, 2013 [1 favorite]

Tell the neurologist and make sure they understand that it's not a depression thing.

In the meantime maybe she could just wash her face/pits at the sink?posted by bleep at 4:26 PM on December 9, 2013

The senses are weird. That comforting patter of water that you feel could be unbearably prickly-or-something for someone else. Parkinson's has known sensory issues associated with it. So the not feeling clean could possibly just be issues getting clean, or it could be that it just doesn't feel the way it always felt before. I have a sensory processing disorder that is much better than it was when I was a kid, but that's one of the big things that happens, showering periodically gets very unpleasant.

One of the things that sometimes helps get through the unpleasant bits, during those episodes, is a bluetooth shower speaker and an audiobook while I'm doing it. Some sort of pleasant distraction. It also sometimes helps if I wash my hair separately, seems like my brain does better when it doesn't have to do everything at once, I'm not sure how much that would carry over but it's worth a try?

I know occupational therapists deal extensively with this sort of sensory thing with kids. I'm not sure how much they might be able to help for Parkinson's, but it's worth looking into.posted by Sequence at 4:29 PM on December 9, 2013 [3 favorites]

Re shampooing hair, there is a product you can buy that is used in hospitals and rehabs for non-ambulatory patients. It's hard to explain but it is some kind of shampoo-infused thick plastic towel that you wrap over your head and scrub. It doesn't drip and doesn't need to be rinsed(?). I've explained it badly but it would totally work for your mother. Also spray dry shampoo?posted by TWinbrook8 at 4:30 PM on December 9, 2013 [3 favorites]

During depressive episodes, I have a lot of sensory distortions - things don't taste right, don't sound right, etc. It's like a migraine or the flu in that way, and for mostly the same reasons. Nearly everyone in my support group has reported major sensory disruption with their disorder, their meds, or both, at least once. Some of us can no longer eat whole categories of food - one girl took a med for a few weeks and hasn't been able to stand carbonated beverages since then (years ago.) And Parkinson's involves one of the exact same neurotransmitters implicated in a variety of mental illnesses/disorders and treatment regimens (*).

Anyway, some things that might help:

A bathtub with jets, fizzy bath salts, etc. - things that change the "texture" of the water

Here is the shampoo cap that I believe TWinbrook8 is thinking of. I've used one before and they do the job in a pinch. That and sponge baths should keep her fairly clean.posted by agatha_magatha at 4:45 PM on December 9, 2013 [3 favorites]

As a consequence of severe depression, I also have developed an aversion to showering. I also have a similar experience of feeling as though it's futile trying to get clean, no matter how long I shower for or how much I scrub. Though I don't have any of the described sensory phenomena, nor Parkinsons disease.

In the shower, or for example when driving long distances, my mind just wanders over depressing thoughts and memories and I sort of get mentally stuck in a rut, whereas when I'm cooking or reading or something like that it's enough of a distraction to keep me out of that state.

A simple remedy that mitigates it a bit in my case is to listen to news or talk radio or podcasts. I took an old computer speaker and stuck it to the wall above the shower curtain rod, which I connect a radio or MP3 player up to while I'm in there.

Also, does she show any greater inclination to shower when she has to go out for doctors' appointments or for other purposes? If so, maybe just arranging for her to go out more regularly or frequently would help.posted by Sockpuppet Liberation Front at 5:12 PM on December 9, 2013 [6 favorites]

she had a very lengthy and thorough bathing routine

Is it possible that she's not able to do something that was important to her, and yet is something she doesn't want you to help with? (Douching? Enemas? Just bathing in general?) With my father, I know he'd much rather be put in a nursing facility than have me help him bathe -- some people are just really private about things like that, especially with their children. Maybe see if it's possible to hire someone to come help her with hygiene, and to also make sure it stays in check and doesn't get too weird. I think (?) Social Security will pay for this type of home care.posted by Houstonian at 5:12 PM on December 9, 2013 [1 favorite]

Could a different shower head, maybe a "massaging" one with multiple settings, help with any of the tactile stuff?posted by Sockpuppet Liberation Front at 5:16 PM on December 9, 2013

If she can't taste food, you might want to ask her about her sense of smell. They're very related. Sometimes a zinc deficiency is the cause and that's easy to treat. Be careful on OTC supplements. They can have mega doses of zinc in them which can cause problems.posted by stray thoughts at 5:43 PM on December 9, 2013

....that doesn't really seem to address her insistence that the water feels strange.

Huh. This is starting to sound like the beginning of an Oliver Sacks anecdote or something.

Does she have a neurologist? I'd maybe ask her to try to describe exactly what she means by the water "feeling strange" -- is it prickly? Electric? Viscous? Cold? Stinky? -- and then bring that detailed account to the neurologist's attention.

Others in here have talked about different causes for the tactile change, but clarifying the symptoms would definitely help sort out which way to turn no matter what (you can't fix the problem until you know exactly what the problem is). And hell, who knows, maybe the description she gives of the water will make you realize that all that's happening is that there's a dead possum in the well or something.

Thanks for all the suggestions, everyone! I don't think there was a private thing she used to do...she's very open with me, and always has been, and I help her with some pretty private things. I will talk to her about the sponge bath and shampoo cap (I suggested dry shampoo before, but she was not interested. A shampoo cap that isn't a spray might work, though).

She's had home health assistants help with showering in the past, and although she was resistant with them as well, she would ultimately be willing to wash. I'm trying to get it in place again, but it's taken some time, and while I'm helping her, I thought it would be worth exploring other people's experiences. If we could find a way that she wouldn't have to shower, I know she would really appreciate it.posted by odayoday at 6:31 PM on December 9, 2013

Since you mentioned she wasn't interested in the spray, there is also dry shampoo powder available [1] [2].posted by Hey Judas! at 7:04 PM on December 9, 2013

What about different temperatures of water? Bath additives like oil to change the feel of the bathwater?posted by windykites at 7:42 PM on December 9, 2013

I'm in my 19th year with Parkinson's and have had some issues with showering of my own, but not to the degree that your Mom has. When I'm going through that particular problem, it's a matter of making myself actually just get into the shower and turn on the water. Once it's on, I settle down and the rest goes well enough - but - I did recently have to get a shower bench because I also have severe lung disease and am on 7 liters of oxygen, 9 liters when doing any exercise, including showering - and still, I was just too short-winded to be able to stand in the shower long enough to accomplish anything. The shower bench has made a world of difference and I'd get one for your Mom whether she thinks she needs it or not (I didn't think I needed it, either)

Please note about the Parkinson's itself: You can't tell how severe someone's Parkinson's is by how severe their tremor is. A good percentage of PD patients have no tremor at all, yet their body has been taken over by what feels like Elmer's glue - it's like trying to move when in thick paste and your muscles get tired and everything in your body slows down to a crawl. Your digestion, for instance. Little muscles are affected just as much as large ones - maybe your eyelid droops or your larynx gets weak/stiff and your voice becomes soft. Everything - every little thing - takes a lot of effort - that's what people don't see. It even affects your breathing - you have to work at it!

The meds are a whole 'nuther thing entirely. Levodopa loosens me up and keeps me moving but it has its off and on moments. Neurologists have a tendency to increase a person's levodopa and drugs in some misguided effort to make them move freely again, but the end result is often agitation and dyskinesia - constant movement, writhing or jerking or whatever - like Michael J. Fox has demonstrated. The far opposite is Muhammad Ali - both have Parkinson's, but it affects us differently. After 19 years of it, I've learned what works for me, but for me only - and that's to take a fairly small amount of levodopa/carbidopa every three hours. I've been on the same amount of that medicine for eight years now and I'm slow and getting slower, but it's okay. One of our grocery clerks has it and is on more medicine by far than I am and she's just dancing all over the place while she's checking out groceries - and she's exhausted, absolutely exhausted, at the end of a work shift.

Your Mom may, then, be agitated and jumpy about getting into the shower due partly to her medication regimen. It's a terrible feeling - you feel like you're going to fly apart into a thousand pieces - that's one reason staying in bed works better than anything else. The depression is bound to happen - can you imagine having such a disease and not getting into a dark depression? Parkinson's is supposed to have it's own depression, but I don't know - I take Lexapro and have for years and wouldn't want to try to face life without it anymore. I tried Paxil, Effexor, Celexa and Wellbutrin before Lexapro and none of them did me any good at all, but the Lexapro works very well - it reduces my anxiety and agitation and prevents me from stacking up all the ugly stuff until I'm buried under it, allowing me a semblance of normal life, and after 19 years of Parkinson's, that's saying something.

I'm so sorry for your Mom and for you, but if you get very picky and detailed with your neurologist about getting her to a smooth place - no excuses for anything else - it should get better. You may memail me anytime.

Is your mom mobile enough to go to a salon for the hair wash? Would a change of scene lighten her depression? Perhaps her Parkinson's makes walking difficult. I only know about Parkinson's what I observe in others. It is a cruel disease but not the same in every one. Muhammad Ali, the Pugilist Poet, has lost the ability to speak. Cruel.posted by Cranberry at 12:55 AM on December 10, 2013

Aryma, thank you so much for your comment. I think you bring up some really good points, and things I hadn't considered. My mom isn't currently on any meds for the Parkinson's, but her neurologist plans to try them once her depression is more under control. I think we're reaching that point in the near future.

My mom also is usually okay once in the shower, it's the anticipation of it that's the problem. I'll get her a bench and encourage her to use it, and also try the dry shampoo and shampoo cap previously suggested to help between showers.

Thank you guys all for your thoughts and ideas. You can easily get stuck in your head with this sort of thing, and hearing others' ideas and experiences makes a big difference.posted by odayoday at 10:30 AM on December 10, 2013 [1 favorite]

Another thing that can help with the "bad feeling" she gets in the shower is a detachable shower head. If she can sit on a bench and hold the shower in her hand (or if you/caregiver can hold it for her) she will have more control over where the water goes, which can help relieve the anxiety. It also may help to have her hold her hand under the running water for a while first, so she can get used to the sensation before having that feeling all over her body.posted by assenav at 7:07 PM on December 10, 2013 [1 favorite]

One other point, odayoday, is about neurologists. Some specialize in epilepsy, others in MS and immune diseases, etc. You want a neurologist who specializes in movement disorders - that's really important. I'm not impressed with a neurologist who wants to wait until your Mom's depression is under better control before he starts her on medication for the disease that's responsible for her depression. Parkinson's is a whole nest of peculiarities of its own and you need a doctor who's completely familiar with all aspects of it. I can almost guarantee that your Mom's desire to spend her time wrapped up in her bed is because nothing "feels right" when she's moving around and trying to do things. I remember how I'd get panicky when walking down a hall (I worked in a building full of corridors) and there was someone walking behind me. I'd be going as fast as I could but my fast was way too slow for ordinary people and I just knew that the two people coming up behind me were unaware that I was moving so slowly as they chatted back and forth and they'd soon run right smack into me, or stumble and catch themselves and embarrass us all because they just figured I was moving at a normal pace. I'd get so nervous about it that I'd watch for a doorway to duck into to let the people go past. It was a nightmare. One time I forgot which corridor I was in and thought that the next right turn had a doorway immediately to the right, so when I turned the corner, I just kept turning right, but there was no doorway and I just slammed into the brick wall. Days like those make you want to go home and hide. I think the worst part is that you know those feelings can't be right, but they're all you have to work with now - and you can't explain how you feel to someone else to save your soul.

Poor Mom - Poor You. Find the right doctor and that will help. There are also clinics and hospital research programs all over the country - and forums for patients online - to help you.
Best of luck to you - I hope it gets better soon. And just for the record - I was 48 and it took me about a year before I was fully functional again.posted by aryma at 8:48 PM on December 10, 2013

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